Limb Lengthening Forum

Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: suddenurge on June 09, 2019, 03:12:37 PM

Title: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on June 09, 2019, 03:12:37 PM
Hi guys,

I had surgery only 2 months ago. I chose tibial lengthening with the LON method. I only wanted 5cm, so it seemed to be a fairly safe option with the internal nail supposedly preventing misalignment. I have just finished lengthening around 5 cm and had my tibias x-rayed (see below). Anyway, as you can see in the x-rays the cut of the left tibia was very poor and left me with very little posterior bone above the cut. On the right tibia, the cut was a little bit better but left me with a posterior fracture where the yellow arrow is. As a consequence, it seems that there is not enough strong posterior bone on either leg to guide the upper part of the tibia along the nail. I suppose, due to the tightness of muscles, ligaments, and lack of bone to force the tibia above the cut to stay in alignment with the nail, it has become misaligned with the tibia below the cut by about 10 degrees on both legs (the angle should be about 90 degrees, I assume). As a side-note, the misalignment is also clearly visible from the outside as big hard bumps in the skin (no pics, sorry). Also, the knees are sore all the time, especially the left knee. I think this has to do with how the external fixators were positioned on my legs. It is as if the angle between where the fixator is attached to my ankle and where it is attached to my knee is wrong. Especially on the left leg, it seems as if it hinders me to fully extend the leg.

x-rays:

https://imgur.com/sP3Rl3S
https://imgur.com/bS4g1C0

I don't understand how this could happen. The doctor told me before surgery, that I have very good and strong bones, so it must be that he did not apply enough force to break the tibias cleanly. Also, I think he cut the bone too high. What is the point of having an internal nail to avoid misalignment, when there is not enough bone around the nail to force the tibia in alignment? Of all the complications, I contemplated before surgery, this never ever crossed my mind, and I cannot seem to find something similar on this forum. I will not write the doctors name here at this point, because I am dependent on his care, and I am not sure he approves. I hope you understand.

Unbelievably, the doctor has told me that I do not need to worry, as the new bone will magically correct the align by itself. But I am not sure what he means by that. Sure new bone will connect the parts somehow. But I highly doubt that it can bring down the angle from 10 to 0 degrees because it seems that this would require some serious force to overcome the opposing forces that facilitated the misalignment in the first place. I am deeply worried that if this will heal with the 10-degree misalignment, as I cannot stand straight. After consulting with an orthopedist that is not a LL specialist, he expressed the same concern and said if the misalignment is not reversed, I will not be able to extend my lower leg fully and will, therefore, have a permanent slight bend in my knees. Also, I suppose, having a misalignment will lead to stress on joints and back because of improper load bearing?

Has anyone had a similar problem? What can be done to resolve this? How much time do I have to fix this before it consolidates with misalignment? I would really appreciate if the community would give me some solid advice that I can bring up when I talk to the doctor next week.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: sylar94 on June 09, 2019, 03:30:37 PM
who is your doctor? at least PM me
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: PANDA:BEAR.. on June 09, 2019, 03:45:07 PM
Which Country did you get your procedure ? I'm sorry to see you in difficulty...
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Great321 on June 09, 2019, 04:04:30 PM
What did the other doctor say what you should do now?

Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Apoplectic on June 09, 2019, 05:34:21 PM
Please pm me the name of the doctor.

I'm very sorry you're going through this and I wish you the very best.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: cobalt on June 09, 2019, 06:45:28 PM
You might have to shorten it back in place as your original bone, let it heal, then remove everything. Then discontinue this method. This is the reason people don't use the single fixator opposed to the spatial frame which can fix misalignment.

As you do not have callus yet, this can be fixed. Speak to your doctor again saying you have sought other opinions of other doctors, he needs to look at it again and have other options ready for you.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: sylar94 on June 09, 2019, 07:04:22 PM
You might have to shorten it back in place as your original bone, let it heal, then remove everything. Then discontinue this method. This is the reason people don't use the single fixator opposed to the spatial frame which can fix misalignment.

As you do not have callus yet, this can be fixed. Speak to your doctor again saying you have sought other opinions of other doctors, he needs to look at it again and have other options ready for you.
What do you mean by single fixator? He did LON, so he used a frame
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: cobalt on June 09, 2019, 07:05:30 PM
The xrays show monorail.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: sylar94 on June 09, 2019, 07:07:45 PM
The xrays show monorail.
you're right
cobalt, do you think this can happen with stryde?
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: cobalt on June 09, 2019, 07:40:39 PM
His issue arise from the surgeon's skill(cut too high, fragmented pt's bones, muscles pulling it out of alignment) and choice of method(monorail), which are poor in this case. The monorail cannot fix it like a TSF for instance can.

There will be be some varying degrees of misalignment with all internal nails the more one lengthens but Precice and Stryde are the top surgeons' choices for safety and results with least risks to patients. Precice and Stryde are engineered so that just about every competent surgeon can execute it the same. The surgeons are also vetted and initially supervised by Nuvasive team.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: PANDA:BEAR.. on June 09, 2019, 09:23:53 PM
His issue arise from the surgeon's skill(cut too high, fragmented pt's bones, muscles pulling it out of alignment) and choice of method(monorail), which are poor in this case. The monorail cannot fix it like a TSF for instance can.

There will be be some varying degrees of misalignment with all internal nails the more one lengthens but Precice and Stryde are the top surgeons' choices for safety and results with least risks to patients. Precice and Stryde are engineered so that just about every competent surgeon can execute it the same. The surgeons are also vetted and initially supervised by Nuvasive team.

The misalignment will be very slight .. with the Precice and Stryde ... but safety results will be high
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: notatroll on June 09, 2019, 11:09:56 PM
You have the EXACT same complication that Cooper had in his tibia, done with Fitbone in Spain. This is PROCURVATUM. Cooper's was very bad according to Paley and Rozbruch. He couldn't extend his leg and thus he couldn't walk, even when his other leg hadn't been operated yet. Other patients had milder forms of procurvatum. Yagen had procurvatum too but he also had a very very bad fibula misalignment (he cropped out the xrays so that readers of his diary remained unaware of it).
You need to have PROCURVATUM corrected ASAP. When did you finish lengthening?
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on June 10, 2019, 12:01:25 AM
Hi again guys, thank you for all the input.

Now regarding Stryde and Precice2. FYI, this surgeon performs both of these as well. So if anyone thinks that the Nuvasive "quality" stamp somehow eliminates surgeons that make this type of elementary mistakes are sorely mistaken. Also, I have an internal nail, so I cannot see any reason why the situation would be any better had I chosen Stryde or Precice2. The problem is not the type of nail that is used, but the fact that there is not enough bone in the tibia above the cut to keep it in alignment with the nail itself. I do not see why using Stryde would eliminate this problem. But I may be wrong.

I am seeing at least one more doctor this week. But I do not expect him to state anything but the obvious. The doctor who performed this surgery did not apply enough force and/or used an inappropriate instrument (maybe a chisel that was unsharpened). Again, the doctor complimented me on my strong bones before surgery. Furthermore, due to my diet and exercise program, I have always known that I have a strong skeleton, period. I always thought this would be an advantage for LL surgery, but obviously not with this doctor.

I have never heard of procurvatum. But just to be clear, if I want to stand up without falling backward, I will have to keep my legs as the person to the right in the pic below, because I cannot fully extend my knee. I stopped lengthening a few days ago after a 2 month lengthening phase. Soon, I will remove the external frame and the internal nail will be locked. I am thinking that this might be a good time to somehow lock the internal nail in a way that aligns both tibias?

https://imgur.com/a/fm2iDK9

Please keep the comments coming.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: notatroll on June 10, 2019, 12:11:33 AM
Hi again guys, thank you for all the input.

Now regarding Stryde and Precice2. FYI, this surgeon performs both of these as well. So if anyone thinks that the Nuvasive "quality" stamp somehow eliminates surgeons that make this type of elementary mistakes are sorely mistaken. Also, I have an internal nail, so I cannot see any reason why the situation would be any better had I chosen Stryde or Precice2. The problem is not the type of nail that is used, but the fact that there is not enough bone in the tibia above the cut to keep it in alignment with the nail itself. I do not see why using Stryde would eliminate this problem. But I may be wrong.

I am seeing at least one more doctor this week. But I do not expect him to state anything but the obvious. The doctor who performed this surgery did not apply enough force and/or used an inappropriate instrument (maybe a chisel that was unsharpened). Again, the doctor complimented me on my strong bones before surgery. Furthermore, due to my diet and exercise program, I have always known that I have a strong skeleton, period. I always thought this would be an advantage for LL surgery, but obviously not with this doctor.

I have never heard of procurvatum. But just to be clear, if I want to stand up without falling backward, I will have to keep my legs as the person to the right in the pic below, because I cannot fully extend my knee. I stopped lengthening a few days ago after a 2 month lengthening phase. Soon, I will remove the external frame and the internal nail will be locked. I am thinking that this might be a good time to somehow lock the internal nail in a way that aligns both tibias?

https://imgur.com/a/fm2iDK9

Please keep the comments coming.

What you have in that picture (person in the right) is a tale-telling sign of procurvatum. Sometimes people can't fully extend their legs because of their muscles being shortened due to lengthening. That's why stretching is recommended. However, when you have procurvatum, it's the bone that hinders you from putting your legs straight and walking. People who say this problem could have been avoided by using internals are mistaken. Cooper and other Monegal tibia patients suffered from procurvatum with the Fitbone nail. The surgeon didn't use a good technique. The surgery for correcting that misalignment isn't easy, no matter what the doctor says. Read Cooper's diary to know more.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: cobalt on June 10, 2019, 12:24:54 AM
Nuvasive wants to make sure the doctors that want to perform Precice and Stryde procedures do it correctly. You should not confuse that with greenlighting for other methods performed by these doctors. Surgeon skill does matter and their experience in handling complications that come up.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: sylar94 on June 10, 2019, 01:21:40 AM
I dont know which is the biggest red flag: the fact that the doctor fked his leg or the fact that the doctor said everything is ok
can you please tell us the doctor or country?
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: TemakiSushi on June 10, 2019, 01:37:10 PM
Nuvasive wants to make sure the doctors that want to perform Precice and Stryde procedures do it correctly. You should not confuse that with greenlighting for other methods performed by these doctors. Surgeon skill does matter and their experience in handling complications that come up.

Oh no no no no
I know the worst doctor in the world performed precice surgery with Nuvasive techs and ended up bending bone...
Even with Stryde we must choose top notch doctors, otherwise those bad doctors will give us horrible results
Don’t go to inexperienced doctors
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: TemakiSushi on June 10, 2019, 01:43:21 PM
Hi guys,

I had surgery only 2 months ago. I chose tibial lengthening with the LON method. I only wanted 5cm, so it seemed to be a fairly safe option with the internal nail supposedly preventing misalignment. I have just finished lengthening around 5 cm and had my tibias x-rayed (see below). Anyway, as you can see in the x-rays the cut of the left tibia was very poor and left me with very little posterior bone above the cut. On the right tibia, the cut was a little bit better but left me with a posterior fracture where the yellow arrow is. As a consequence, it seems that there is not enough strong posterior bone on either leg to guide the upper part of the tibia along the nail. I suppose, due to the tightness of muscles, ligaments, and lack of bone to force the tibia above the cut to stay in alignment with the nail, it has become misaligned with the tibia below the cut by about 10 degrees on both legs (the angle should be about 90 degrees, I assume). As a side-note, the misalignment is also clearly visible from the outside as big hard bumps in the skin (no pics, sorry). Also, the knees are sore all the time, especially the left knee. I think this has to do with how the external fixators were positioned on my legs. It is as if the angle between where the fixator is attached to my ankle and where it is attached to my knee is wrong. Especially on the left leg, it seems as if it hinders me to fully extend the leg.

x-rays:

https://imgur.com/sP3Rl3S
https://imgur.com/bS4g1C0

I don't understand how this could happen. The doctor told me before surgery, that I have very good and strong bones, so it must be that he did not apply enough force to break the tibias cleanly. Also, I think he cut the bone too high. What is the point of having an internal nail to avoid misalignment, when there is not enough bone around the nail to force the tibia in alignment? Of all the complications, I contemplated before surgery, this never ever crossed my mind, and I cannot seem to find something similar on this forum. I will not write the doctors name here at this point, because I am dependent on his care, and I am not sure he approves. I hope you understand.

Unbelievably, the doctor has told me that I do not need to worry, as the new bone will magically correct the align by itself. But I am not sure what he means by that. Sure new bone will connect the parts somehow. But I highly doubt that it can bring down the angle from 10 to 0 degrees because it seems that this would require some serious force to overcome the opposing forces that facilitated the misalignment in the first place. I am deeply worried that if this will heal with the 10-degree misalignment, as I cannot stand straight. After consulting with an orthopedist that is not a LL specialist, he expressed the same concern and said if the misalignment is not reversed, I will not be able to extend my lower leg fully and will, therefore, have a permanent slight bend in my knees. Also, I suppose, having a misalignment will lead to stress on joints and back because of improper load bearing?

Has anyone had a similar problem? What can be done to resolve this? How much time do I have to fix this before it consolidates with misalignment? I would really appreciate if the community would give me some solid advice that I can bring up when I talk to the doctor next week.
It seems that your doctor don’t know what he’s doing
Forget about this doctor and go see highly experienced doctors
If your doctor were competent, he wouldn’t have made such a bad mistake and never say such stupid things
It’s very obvious he cannot do anything now
You’ll probably need to change your frame to TSF to fix alignments
Some people think it’s easy to handle TSF because it’s computerized adjusting
But in fact with any kind of frames, doctors abilities and philosophy is very important to bring good outcomes
I would never trust your doctor
He can even worsen the complications you already have
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on June 10, 2019, 01:50:56 PM
Hi again guys,

Let me just say that I perfectly understand why so many sent me PM:s asking for the name of the doctor. However, I strongly feel that I should give the doctor a chance to change his mind first and come up with a solution. Even though it is hard to admit it, what is done is done, and all that matters now is how he deals with it. But, let me at least assure you that he is not one of the more common doctors that you so often read about in patient diaries. I am really thankful to the other doctor that I met last week who raised the alarm whilst it is still time to do something about it, without him, I would most likely never found out until the misalignment was a permanent disability.

I have another question for the forum. Let us say that he refuses to deal with it. What European doctor would you recommend to fix this?

 
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on June 10, 2019, 02:27:01 PM
Nuvasive wants to make sure the doctors that want to perform Precice and Stryde procedures do it correctly. You should not confuse that with greenlighting for other methods performed by these doctors. Surgeon skill does matter and their experience in handling complications that come up.

But my point is that the break of the bone is exactly the same procedure whether or not you are using LON or Stryde. It is the most basic and fundamental step which all lengthening processes with internal nails rest upon. So it is really not the question of being an expert in one method but not the other.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: PANDA:BEAR.. on June 10, 2019, 04:04:01 PM
Hi again guys,

Let me just say that I perfectly understand why so many sent me PM:s asking for the name of the doctor. However, I strongly feel that I should give the doctor a chance to change his mind first and come up with a solution. Even though it is hard to admit it, what is done is done, and all that matters now is how he deals with it. But, let me at least assure you that he is not one of the more common doctors that you so often read about in patient diaries. I am really thankful to the other doctor that I met last week who raised the alarm whilst it is still time to do something about it, without him, I would most likely never found out until the misalignment was a permanent disability.

I have another question for the forum. Let us say that he refuses to deal with it. What European doctor would you recommend to fix this?

If you have the funds and would like to fix this problem.. then I advise you to see Dr paley... he's the one who can deal with this .. there are other doctors in USA..... which will help ..
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Great321 on June 10, 2019, 05:20:07 PM
I would suggest you to write to several doctors in hope for a fast response from someone. Send them your latest X-rays and explain how urgent it  is (write URGENT in the subject of your mail) and ask if and how they could help you. Then you can still decide which reply sounds the best. .

Some european doctors that come to my mind are Dr. Baumgart (Experienced but expensive, Germany), Dr. Pili/Catagni (Italy), Dr. Giotikas (Greece)

A couple of hours from where I live there is a hospital that is also very experienced in limb lengthening/correcting with external fixators: (Pretty sure they also speak English)
Klinik für Unfallchirurgie
Medizinische Hochschule Hannover
Tel.: +49 511 532-2099
info@mhh-unfallchirurgie.de

OR

those doctors in Britain who help unicorn currently


Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Apoplectic on June 10, 2019, 05:37:28 PM
Dr giotikas seems like a good bet since he used to be a military doctor that specialised in correcting issues with limbs arising from combat so this seems like something that he'll have some experience in dealing with.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: cobalt on June 10, 2019, 06:14:23 PM
Guichet was considered a top surgeon by many on here until Unicorn's case where he severely mishandled it when complications arose. Some "top" surgeon can make mistakes in operating room, the most important thing afterwards is how they respond. There is even a video of Guichet doing a "karate chop" on patients' legs. Some surgeons employ unconventional methods to break bones, very risky to pt.

The point is some tools and nails are developed to mitigate the risks(points of cuts and insertion designated, not just randomly decided by the dr) cause less trauma to patients and less pain(subjective) which Precice and Stryde does. There is no comparison. In the end, a tool is just a tool, it lies with the person using it. The makers have done their job.

A person has to do their due diligence to choose the right doctor for themselves. It is wise to choose the surgeons who have seen it all. You have to look into their cases, their knowledge, and what they specialize in such as deformity cases. Those who are not advertising CLL but are dedicated to reconstructing deformed limbs. I hope your situation improves but do not defend monorail and your choice, it is a bad one. No one else should make this mistake.


Title: Re: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on June 11, 2019, 01:25:16 PM
Thanks for the suggestions. I have contacted many of the doctors suggested in this thread. Hoping to hear from them soon. Meanwhile, I am very disappointed about how this could have happened and kept in the dark.

I would still be grateful if anyone could give me an idea on how time sensitive this surgical correction is?

Do you think that TSF frames would be the only option? I would have to wear them for the whole consolidation period, right?
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Great321 on June 11, 2019, 01:37:28 PM
Thanks for the suggestions. I have contacted many of the doctors suggested in this thread. Hoping to hear from them soon. Meanwhile, I am very disappointed about how this could have happened and kept in the dark.

I would still be grateful if anyone could give me an idea on how time sensitive this surgical correction is?

Do you think that TSF frames would be the only option? I would have to wear them for the whole consolidation period, right?

TSF frames can be replaced with a nail as soon as you're misalignment is corrected I guess. Because I have TSF frames on and if I wanted to I could have replaced them.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on June 11, 2019, 02:36:11 PM
Thanks for the reply. I already have a nail, albeit not an expanding one. But since the lengthening is finished this would not matter. Is it not possible that when removing the external fixator, one could reduce the misalignment and then fixate the new alignment by locking the nail in the new position using screws?
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Great321 on June 11, 2019, 03:24:15 PM
Sorry I have no idea about the medical possibilities. Maybe someone else though. Please let us know if you find a solution with a doctor.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: sylar94 on June 11, 2019, 03:28:00 PM
suddenurge why did you notice this problem only after lengthening the 5 cm?
i think you are a good example of why everyone should start a diary so that other people can notice something like this
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: doomsday on June 11, 2019, 06:45:14 PM
Non of the people sitting here will be able to tell you whats going on. It seems bad but not too bad. Definitely you need to get a second opinion from a different doc.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Jim_dabarber on June 12, 2019, 12:20:18 AM
That alignment is really bad man. Correction needs to be done asap before the bone starts to bridge. If that were to happen then a surgery to rebreak the bone would have to be made. Your misalignment started from day 1 of nail insertion. Your doctor should have kept the alignment in better position. Only thing to do now is instal an external frame that allows you to manipulate the degrees and angles of the bone in order to re-align them together. The nail would have to be taken out first because at this point it will be in the way and you risk the chance of fracturing the bone from unwanted pressure elsewhere. Corrections would then be able to be done but only slightly each day. Doing corrections too fast you risk the chance of nerve damage. Once corrections are done and the bone is perfectly aligned then a nail can be re inserted and locked and external frames taken off. Good luck man. Any doctor in the US should be able to help you, Dr Giotikas has done a good job on a female patient on this forum and of course Dr Kulesh and Dr Solomin my doctors in Russia will be more than happy to help you. Please get help asap.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: dinozzo on June 12, 2019, 09:22:58 AM
Why was the bone broken so high, and why don't you wanna mention the doctor? if he is a good doctor then it's fine mistakes can happen everywhere even with the best doctors.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on June 12, 2019, 04:02:33 PM
I got the question, why I did not react to this earlier. Well, here is what happened. First of all, I trusted the doctor not to hurt me. Is that being gullible? In hindsight, yes. But everyone involved in the surgery acted nice long after surgery was and everyone told me everything went great during surgery. I have never done this before and there were no obvious signs that they were hiding anything. I come from a country where the trust level is high, even lawyers are considered trustworthy and doctors definitely tops the list of trustworthy professions. It is inconceivable to me that doctors that swear to do no harm first, would not at least be truthful about how the operation went. Of course, all of this may not come down to deception but rather incompetence and lack of prudence on the doctor's part. Regardless, it is unacceptable.

The first x-rays we took, were taken from the front and the side. I contacted the doctor and asked him to send me them the day after. He then actually sent me femur x-rays of another person. I got back to him and he apologized and then he only sent me a picture of his computer screen where he had my frontal x-ray. But this problem is really only visible from the side, so I never saw anything that would alarm me. Truthfully, I was not looking for anything wrong, since he assured me everything went perfect during operation and I trusted him. I was also embarrassed on his part for sending me the wrong file, so I did not press it any further.

When the second x-rays were taken, for some reason, they were only taken from the front. Again, I trusted the doctor to tell me the truth at all times. I am not big on conspiracy theories, so I found an innocent explanation for it. I even thought it was positive since x-rays are not exactly healthy for you.

The third x-rays were taken from the front and the side. Interestingly, before sending me the x-rays, the doctor called me up and told me that I had reached 6 cm and because of premature consolidation I should double the distraction. We actually spoke for several minutes on the phone, until I finally convinced him that he had me confused with another patient (again!). He apologized and 3 days later, after reminding him, I got the x-rays. But the side x-ray was not taken with the tibia flat on the surface as the ones I posted at the beginning of the thread. Instead, they were taken at an angle where most of the tibia was covered by the external device. So you could not, for instance, see the posterior part of the bone at all. Because of this angle, the misalignment in the front did not show as well as in my latest x-rays. It is also probably so that the misalignment has increased the more I distracted. Still, I asked him about it, and he told me that it was not a problem, because new bone formation will correct the align.

The fourth x-rays, taken less than a week ago, I did at a completely different clinic. This time the side x-rays were taken with the foot and tibia completely flat on the side. It revealed everything. Also because I did the x-ray somewhere else, I also got another doctor's opinion for the first time. I have asked my doctor to comment on them, but the only thing he said was that I have reached my distraction goal on both legs, that the distraction is even and that new bone formation was good (!). He said he was busy with other things when I got hold of him, but promised to come back to me this Monday. There was no point in me pushing him at that point. However, as of today, Wednesday, he has still not commented on the x-rays. The only thing he said, after I contacted him on Monday through IM, is that they would arrange to remove my external fixator.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: dinozzo on June 12, 2019, 05:52:08 PM
And you still don't wanna say his name, are you looking for some other patients to get cripled? go to another doctor.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: PANDA:BEAR.. on June 12, 2019, 06:00:42 PM
And you still don't wanna say his name, are you looking for some other patients to get cripled? go to another doctor.

If he cannot tell us the name ... can he mention the country...???
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on June 12, 2019, 07:01:35 PM
I am sorry guys  :( until I know where my doctor stands and what he intends to do about my situation, I will not reveal the name or the country (there are at most only a few well known LL doctors in each country anyway). I have to at least give him the opportunity to give his side of the story and explain why this happened and come up with a solution. As previously mentioned, he has always come across as a nice person, even though he often seems overworked. People say that I should just switch doctors like that. Setting the high cost aside, how do I know I can trust the next doctor? Let me assure you that there is nothing wrong with this doctor's credentials. Based on them, I would never have believed this could happen. If there is any help, I can reveal that he is not a US doctor.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: PANDA:BEAR.. on June 12, 2019, 07:06:50 PM
I am sorry guys  :( until I know where my doctor stands and what he intends to do about my situation, I will not reveal the name or the country (there are at most only a few well known LL doctors in each country anyway). I have to at least give him the opportunity to give his side of the story and explain why this happened and come up with a solution. As previously mentioned, he has always come across as a nice person, even though he often seems overworked. People say that I should just switch doctors like that. Setting the high cost aside, how do I know I can trust the next doctor? Let me assure you that there is nothing wrong with this doctor's credentials. Based on them, I would never have believed this could happen. If there is any help, I can reveal that he is not a US doctor.


Thanks for telling us ... your situation... we hope you recover well... please remember everyone is here to help you as much as we can ... god bless!
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: dinozzo on June 12, 2019, 07:38:32 PM
I assume it's in turkey, since they all purpose the Lon method. Hope you will get better and find a better surgeon to fix it.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on June 14, 2019, 09:52:17 AM
Hi guys, some updates:

I have gotten responses from several doctors.

Dr. Pili and Dr. Catgani want to do TSF frames to correct deformity plus compression-distraction to deal with lack of bone growth. The posted x-rays were taken right after I finished lengthening about 70 days after surgery. I am hoping bone formation will increase now that I stopped lengthening and try to walk more with crutches. Is my bone growth really that bad? There is clearly new bone forming, but maybe at rate that is too slow. What do you say?

Professor Dr Krettek (Hannover), Dr. Giotikas and Dr. Monegal want to remove the external fixator, realign the nail to correct the misalignment and then put poller screws to prevent flexion deformity (procurvatum) going forward.

TSF frames is a huge commitment, which I am not sure I can handle. My sleep with these sleek monorails have been definitely been compromised, so I can't even imagine what it would be like with TSF frames. Also, it seems unlikely that I can go back to work with TSF frames. So it would mean 12 months off work, maybe without any work compensation from the government. I think I am going to have to try alternative 2 first, and if it does not work, I will have to bite the bullet and have the TSF frames at a later stage. What do you think?

Also, armed with all the responses I have gotten from doctors, I am going to confront my doctor today and hear his explanations and suggestions.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Ghostfish on June 14, 2019, 10:55:33 AM
Hi suddenurge

I am so sorry that you are suffering from a serious complication.  It is certainly caused by the doctor.  Dr. Pili/Dr. Catgani seem to have good reputation and Dr. Giotikas is another new doctor growing reputation these days.  They seem to be trustworthy.  I don't know very well about Dr. K and Dr. M. Although I am not a doctor and don't like/recommend TSF frames, it may be a better solution for you.

I think your bones already have procurvatum or some sort of deformity.  Preventing it from going worse is not the best option.  I think you need to correct it, which can be done ONLY (I believe) by external method.  Dr. K, G, M's suggestion is only to prevent it from going worse and may correct some misalignment, which I think is not good enough.  Since you already finished lengthening, you just need to consolidate your bones which may take 3-4 months depending on your bones.  Dr. G also can do external method.  Anyway, it is my thought.

Good luck!
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Great321 on June 14, 2019, 11:07:50 AM
Nice that you already have several responses!

It's difficult to see much since your monorails cover much of the X-rays. Do you take Vitamin D supplements?

With the exception of a couple of days during these 8 months I was actually able to sleep normally with the TSF frames. But that's maybe different for each person depending on how they are used to sleep. I don't know how long it takes to correct such a deformity but after the alignment, I'm pretty sure you could replace it with an internal nail again (which costs about 7k plus again though). Fully externals could take even 7+ months more for you. I don't recommend that to anyone.

TSF frames are a sure thing, they are very stable..you can shorten and lengthen again if necessary, falling down (I did once) or bumping into things is no problem either. But as 3 doctors offered Alternative 2...it can't be wrong either.

Consider that you could apply for a cost takeover (Kostenübernahme in German) from your health insurance. The chances are low but not impossible. What matters is that you apply before the next surgery. Don't know though if they pay if you do the surgery before their final response/approvement. Because in your case it could be medical reason now.

Which of the doctors of the seconde alternative would be convenient for you? From what I've read Dr. Monegal doesn't seem very reputable in the way he tries to convince possible patients. I would either choose Dr. Krettek (even if I never heard of him personally but ...it's a German clinic which is experienced in deformities but Germany is also more expensive in general) or Dr. Giotikas whom I trust as his patient, his main area are also deformities after accidents and such and you can always contact him with questions even after the surgery.

Good luck with your doctor today. He might offer you the same treatment one of the other doctor's recommended but then it's up to you if you trust him again. I hope he won't be rude to you since you asked other doctor's which is kind of showing to him that you don't trust him that much anymore.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on June 14, 2019, 04:47:07 PM
Nice that you already have several responses!

It's difficult to see much since your monorails cover much of the X-rays. Do you take Vitamin D supplements?

Comment: Yes I do

With the exception of a couple of days during these 8 months I was actually able to sleep normally with the TSF frames. But that's maybe different for each person depending on how they are used to sleep. I don't know how long it takes to correct such a deformity but after the alignment, I'm pretty sure you could replace it with an internal nail again (which costs about 7k plus again though). Fully externals could take even 7+ months more for you. I don't recommend that to anyone.

Comment: For 5 cm at least 10 months is needed for consolidation, I have been told. If bone formation is a bit slower, it takes even longer. 10-12 months with TSF must be unbearable.

TSF frames are a sure thing, they are very stable..you can shorten and lengthen again if necessary, falling down (I did once) or bumping into things is no problem either. But as 3 doctors offered Alternative 2...it can't be wrong either.

Comment: TSF frames has a lot of benefits with its size being its one really serious drawback. To be fair, Doctor Monegal did not go into as much detail as the other doctors, but I certainly interpreted what he said as something along with solution 2.

Consider that you could apply for a cost takeover (Kostenübernahme in German) from your health insurance. The chances are low but not impossible. What matters is that you apply before the next surgery. Don't know though if they pay if you do the surgery before their final response/approvement. Because in your case it could be medical reason now.

Comment: Yes it is more of a medical reason. Maybe if my home country cannot offer some form of solution (not very likely), as a citizen of the EU, I will have to look into that.

Which of the doctors of the seconde alternative would be convenient for you? From what I've read Dr. Monegal doesn't seem very reputable in the way he tries to convince possible patients. I would either choose Dr. Krettek (even if I never heard of him personally but ...it's a German clinic which is experienced in deformities but Germany is also more expensive in general) or Dr. Giotikas whom I trust as his patient, his main area are also deformities after accidents and such and you can always contact him with questions even after the surgery.

Comment: I would probably also do it with Dr. Giotikas.

Good luck with your doctor today. He might offer you the same treatment one of the other doctor's recommended but then it's up to you if you trust him again. I hope he won't be rude to you since you asked other doctor's which is kind of showing to him that you don't trust him that much anymore.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Kenda on August 12, 2019, 09:09:12 PM
Oh no no no no
I know the worst doctor in the world performed precice surgery with Nuvasive techs and ended up bending bone...
Even with Stryde we must choose top notch doctors, otherwise those bad doctors will give us horrible results
Don’t go to inexperienced doctors

Who is a surgeon that gave complications with stryde??
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Steffan on August 13, 2019, 02:45:32 AM
I have been told that lengthening the femur is better since the bone is a lot thicker.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: shegella on May 26, 2020, 11:26:31 AM
Need some uprage for this dailly.

How things can be fixed?

ıF we got problem ,how can we gonna fix?

so important but cutted dailiy
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: marathonrunner on May 29, 2020, 09:43:05 AM
Kenda, you can PM me if you want to know A surgeon that that had complications with stryde.

I don't know about other's but I can give you my experience with it.

Actually you can probably just search my screenname and find the posts.

Tameki is right, just because a doctor has stryde doesn't mean they know what they are doing.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: seriouslyinjured on May 29, 2020, 12:59:51 PM
me,     dr ozgur from wannabe taller would have crippled me he used stryde charged me 55000 euros and without surgical intervention from giotikas i would be wheel chair bound
http://www.limblengtheningforum.com/index.php?topic=64740.0
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: 184dream on June 02, 2020, 01:26:09 PM
i hope you are safe now  .. ppl lives arent a joke ban scammers
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: suddenurge on August 12, 2020, 05:30:44 AM
I don't really use this forum much anymore. But since I still keep getting PMs asking for the name of the dangerously incompetent butcher that permanently wrecked my tibias, his name is:


Özgur Karakoyun, pushed on to me by lying scam artists Wannabetaller

Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Hagane on August 12, 2020, 05:52:11 AM
I don't really use this forum much anymore. But since I still keep getting PMs asking for the name of the dangerously incompetent butcher that permanently wrecked my tibias, his name is:


Özgur Karakoyun, pushed on to me by lying scam artists Wannabetaller

there it is
i remember seeing this thread last year; finally got our answer!
i hope youre recovering well and everything got sorted!
@suddenurge now the question is: who is the doctor that saved your leg?

Title: Re: How fked am I? What to do about tibial misalignment?
Post by: m7liam on August 14, 2020, 06:59:46 AM
So what happened in the end?
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: 0010010 on August 24, 2021, 02:16:44 PM
Sounds like he got it fixed in the end by Dr G. Hell of a lot F'n around though and stress. Poor guy. Rough deal. I completely understand why he wants to move on and not think about it.

It seems like on the 3 cases where this happened (and Dr G has had to fix) the nail has been put in at the wrong angle. Right?
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: SirStretchAlot on August 25, 2021, 10:17:14 AM
Yeah, Turkey may be cheap, but tragedies like this happen all the time there. I'd say with the exception of Dr Buldu, which I have seen many successful diaries of, stay away from Turkey.
Title: Re: How fked am I? What to do about tibial misalignment?
Post by: Activatedxx on August 26, 2021, 02:24:35 AM
Yeah, Turkey may be cheap, but tragedies like this happen all the time there. I'd say with the exception of Dr Buldu, which I have seen many successful diaries of, stay away from Turkey.

Dr Buldu made a mistake to on me and another patient while I was lengthening. It wasn’t permanent but required an extra surgery and longer recovery time for that leg